Ce livre regroupe l'ensemble des informations nécessaires à la pratique des soins palliatifs pédiatriques : cadre réglementaire, concepts théoriques et projet de soin. Ayant pour fil conducteur les questions auxquelles le praticien et les équipes sont confrontés au quotidien, l'ouvrage prend en compte les interactions pluridisciplinaires.
Le présent article, sous forme de dialogue, est issu de la réflexion commune entre différents soignants (oncologue, deux psychologues et infirmière de l’équipe de soins de liaison) de l’unité d’hémato-oncologie d’un hôpital universitaire pédiatrique situé au sein de l’Union européenne à propos du suivi d’O. O. était une jeune fille âgée de 15 ans au moment du diagnostic ; elle était atteinte d'une tumeur maligne pelvienne avec infiltration génitale. L’objet de cet article est le partage d’expérience autour de cette situation qui nous a fortement impliqués et a demandé un ajustement permanent de nos pratiques, de nos croyances, nous obligeant ainsi à bousculer nos codes.
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences.
AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making.
DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018.
SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital.
RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied.
CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.
Si pour la plupart des gens Noël représente les fêtes en famille, les yeux des enfants qui pétillent en ouvrant les cadeaux, les repas festifs, il n’en est rien pour Lyse. Ce jour-là, son monde s’est effondré, Parti en éclat en une fraction de seconde.
La perte subite et inattendue de la personne qui comptait le plus au monde la laisse anéantie.
Mais il faut continuer à vivre. Reprendre le cours de la vie malgré la douleur.
Par un matin humide de janvier, Lyse reprend le chemin du lycée comme si de rien n’était.
Même si elle ne laisse rien paraître de son mal-être, la souffrance et la culpabilité la rongent petit à petit de l’intérieur.
Se recueillir le long des sentiers littoraux varois et contempler la mer l’apaisent. Mais comment faire face à ce deuil impossible ? Comment se reconstruire ? Ou trouver la force de continuer à vivre ?
Une rencontre accidentelle va bouleverser sa vie et remettre en question toutes ses certitudes.
Interventions for bereaved children and families range from supportive counseling, designed to promote social connectedness and expression of feelings and thoughts about the deceased, to intensive trauma/grief-specific therapy, designed to ameliorate symptoms of posttraumatic stress disorder (PTSD) and depression. That said, professionals have few brief assessment instruments to match response and functioning to appropriate interventions. To expedite the screening and referral process for bereaved families, Brown, Goodman, and Swiecicki (2008) developed the PTSD and Depression Screener for Bereaved Youth, a 19-item measure of bereavement-related history and symptoms of PTSD and depression. The current study is a psychometric evaluation of the Screener for Bereaved Youth. Data were collected from 284 bereaved children, 6–17 years of age (M = 12.4; SD = 2.9). A factor analysis revealed distinct subscales for PTSD (eight items) and depression (four items). The PTSD and depression subscales showed both concurrent and discriminant validity. Endorsement of four items on either subscale was associated with meeting full criteria on more extensive measures of PTSD and depression. These findings are discussed with specific consideration to the multiple systems in which the measure could be used and applications to clinical services.
Despite the potentially devastating effects of a death on the lives of adolescents, little is known about their help-seeking experiences. We interviewed by telephone 39 bereaved adolescents on their help-seeking experiences. Thematic analysis resulted in three themes: Formal support, Informal support and School-related support. Participants provided a critical appraisal of positive and negative experiences, and noted barriers and facilitators for help-seeking. As adolescents bereaved through suicide may receive less social support, professional help is a much-needed auxiliary. Parental encouragement is important in accessing adequate professional help.
This meta-analysis synthesizes the results of 14 independent studies conducted in the U.S. (N = 6979 participants) that examined sex differences in internalized, externalized, and PTSD symptoms associated with grief during adolescence. The mean age of participants was 12.22 years (SD = 2.31) with 50% male and 50% female sex assigned at birth. While no mean-level differences were found between adolescent females and males in externalizing behaviors associated with grief (d = 0.03), on average, females reported higher levels of internalized grief responses (d = 0.18) and higher levels of PTSD symptoms (d = 0.36) than their male counterparts. Findings suggest the need for additional, more nuanced research to investigate possible sex differences in externalized behaviors relating to grief. In addition, research should examine whether tailored therapeutic and intervention measures and resources are needed for adolescents experiencing internalized grief and PTSD symptoms given sex differences in these reactions.
BACKGROUND: Maltreated youth are at an elevated risk for the development of problem behaviors. Coping with the death of a family member or close friend during adolescence, referred to as bereavement, is a stressful event that could potentiate risk linked to maltreatment. However, developmental research suggests that youth adjustment is a product of multiple risk and protective factors. Although maltreated youth who experience loss may be particularly vulnerable to behavior problems, personal and contextual factors may attenuate or exacerbate youths' risk for internalizing and externalizing psychopathology.
OBJECTIVE: The overarching goal of this study is to examine individual, family, and community-level protective factors for maltreated youth who experience bereavement. Specifically, we aim to examine the effect of age 12 bereavement on age 16 internalizing and externalizing psychopathology, and to investigate the moderating role of multi-level protective factors at ages 14 and 16.
METHODS: The study consisted of a sample of 800 youth (52.4% female, 45.1% African-American) drawn from the Longitudinal Studies of Child Abuse and Neglect (LONGSCAN), collected from 1998 to 2011.
RESULTS: Maltreated youth who experienced significant loss were at increased risk for externalizing symptoms, compared to non-bereaved maltreated youth (ß = 0.085, p < .05). Individual future orientation (ß = 0.103, p < .05) family future orientation (ß = -0.120, p < .05), parental monitoring (ß = -0.123, p< .01), and neighborhood collective efficacy (ß = -0.126, p < .01) each significantly moderated the association between bereavement and externalizing symptoms.
CONCLUSIONS: These results have implications for future interventions aimed towards reducing problem behaviors in adolescents with a history of child maltreatment and who experience bereavement.
OBJECTIVES: To assess the availability and efficacy of interventions open to adolescents and young adults (AYAs; 15-25 years) bereaved by a parent's or sibling's cancer.
METHODS: A systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent's or sibling's cancer was conducted through searches of six online databases (PsycINFO, Medline, Scopus, Embase, SWAB and Web of Science Core Collection).
RESULTS: Database and reference searches yielded 2985 articles, 40 of which were included in the review. Twenty-two interventions were identified that were available for bereaved young people. However, only three were specific to young people bereaved by familial cancer, and none were specific to AYAs. Interventions primarily provided opportunities for participants to have fun, share their experiences and/or memorialise the deceased; psychoeducation about bereavement, grief and coping was less common. Only six interventions had been satisfactorily evaluated, and no intervention targeted or analysed data for AYAs separately. Overall, some evidence suggested that interventions (especially those that were theoretically grounded) had positive effects for bereaved young people. However, benefits were inconsistently evidenced in participants' self-reports and often only applied to subgroups of participants (eg, older youths and those with better psychological well-being at baseline).
CONCLUSIONS: Considering the very limited number of interventions specific to bereavement by familial cancer and the lack of interventions targeting AYAs specifically, it is unclear whether currently available interventions would benefit this population. The population of AYAs bereaved by familial cancer is clearly under-serviced; further development and evaluation of interventions is needed.
Chaque année, en France, 1200 Adolescents et Jeunes adultes
(AJA) entre 15 et 25 ans sont diagnostiqués pour un cancer. Ses
formes les plus fréquentes sont les lymphomes, les sarcomes, les
tumeurs germinales, les leucémies aiguës et les tumeurs du
système nerveux central.
Dans cette classe d'âge, de nombreuses études ont mis en corrélation le risque plus élevé de mauvaise observance des traitements
associés à celui de rechute de la maladie.
En plus des problématiques adolescentes, ils sont à la fois confrontés
à une maladie grave avec risque vital, et à des traitements
prolongés sur plusieurs mois qui vont interférer avec leurs projets
d’études, de travail et leurs relations familiales et sociales. L’adolescent ou le jeune adulte à qui l’on annonce un diagnostic de cancer va connaître, en plus des transformations corporelles liées à la maladie et aux traitements, nombre de bouleversements sur les liens familiaux, amicaux et amoureux, sur la scolarité et la ormation professionnelle, la recherche d'un premier emploi…
La création d’unités ou d’équipes multidisciplinaires AJA avec un
personnel spécifiquement formé, permet de créer un cadre favorable
à une observance thérapeutique adaptée, et un accompagnement médical et humain au plus près des besoins des patients, tout en soutenant leurs projets de vie.
Nous proposons, par cet article, de présenter la prise en charge AJA en oncologie, et plus spécifiquement celle de l’Institut Curie.
This article offers a reflection of two studies conducted with bereaved college students and the feedback on motivations to be interviewed about their grief experiences. Although this was not the initial intent of the original mixed methods study, the unexpected and overwhelming response of students who signed up to interview about their grief experiences warranted an additional examination to explore this surprising phenomenon. Responses in 45 interviews centered on motivations of wanting to share their experiences, feeling safe sharing their experiences, and wanting to help other students who may be experiencing grief. Implications and recommendations for future research are provided.
OBJECTIVE: The aim of this study was to investigate levels of perceived family cohesion during childhood, teenage years, and young adulthood in cancer-bereaved youths compared with non-bereaved peers.
METHODS: In this nationwide, population-based study, 622 (73%) young adults (aged 18-26) who had lost a parent to cancer 6 to 9 years previously, when they were teenagers (aged 13-16), and 330 (78%) non-bereaved peers from a matched random sample answered a study-specific questionnaire. Associations were assessed using multivariable logistic regression.
RESULTS: Compared with non-bereaved youths, the cancer-bereaved participants were more likely to report poor family cohesion during teenage years (odds ratio [OR] 1.6, 95% CI, 1.0-2.4, and 2.3, 95% CI, 1.5-3.5, for paternally and maternally bereaved youths, respectively). This was also seen in young adulthood among maternally bereaved participants (OR 2.5; 95% CI, 1.6-4.1), while there was no difference between paternally bereaved and non-bereaved youths. After controlling for a number of covariates (eg, year of birth, number of siblings, and depression), the adjusted ORs for poor family cohesion remained statistically significant. In a further analysis stratified for gender, this difference in perceived poor family cohesion was only noted in females.
CONCLUSION: Teenage loss of a parent to cancer was associated with perceived poor family cohesion during teenage years. This was also noted in young adulthood among the maternally bereaved. Females were more likely to report poor family cohesion. Our results indicate a need for increased awareness of family cohesion in bereaved-to-be families with teenage offspring, with special attention to gender roles.
To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement – Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer.
Methods:Nine HCPs (four nurses and five physicians) took part in in-depth semistructured interviews. Participants were eligible if they were a nurse or physician in Atlantic Canada; cared for at least one AYA patient with terminal cancer in the past 3 years; and were able to speak and understand English. Data were analyzed using interpretive phenomenological analysis.
Results: Analyses revealed four superordinate themes present in the data: (1) many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; (2) an intense emotional experience compared with caring for patients with terminal cancer of other ages; (3) personal identification with patients and their families; and (4) attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness.
Conclusions: HCPs experienced unique emotional and logistical challenges when caring for AYAs with terminal cancer, which can influence the care they provide. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of health care services to this population.
Purpose: This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress.
Methods: In total, 278 bereaved offspring and 38 bereaved siblings (12–25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10).
Results: Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0–58); 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0–57); 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for “support from other young people” and “time out and recreation” were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups.
Conclusions: Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support; with the intent to reduce their risk of mental illness and psychological distress.
Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.